Thursday, July 31, 2008

The impact of autism and a mom's hope

New Island school adds to services for growing population
Sunday, July 27, 2008

STATEN ISLAND, N.Y. -- Like most parents, Marilyn Sarin didn't take it lightly when she found out her daughter had autism.

"I cried," she said. "I cried and cried. When she was first diagnosed, I think it was one of the scariest things I've ever been through."

The Pleasant Planes resident wondered if 2-year-old Gia Nicole would ever lead a normal life, whether she would ever learn to speak and socialize with others her age. She also wondered if she was the only one with those fears.

"It's really hard because other people don't understand what you're going through," Mrs. Sarin said.

Her outlook changed once Thursday's Child moved to Staten Island. An early-intervention school for kids with autism, Thursday's Child opened in Dongan Hills in March, bringing with it a support system for parents like Mrs. Sarin and innovative learning techniques for children like Gia.

Autism spectrum disorders are developmental disabilities that can be diagnosed to children who are about two years old and have shown impairment in social interaction and problems with communication. It is also marked by restricted or repetitive behaviors.

Dr. Helen Murphy, one of the school's founders, said Thursday's Child is new to the Island, but not new. She has been running a branch in Brooklyn for about 10 years and recognized a need for a school here when she noticed a lot of Island families traveling to the branch in Brooklyn.

Thursday's Child is a public school and tuition is funded by the city and state. It is among a handful of schools on the Island for children with autism though its focus on early intervention is rare. Dr. Murphy has welcomed about 20 Island families to the new school since it opened in March.

In the classroom, students receive one-on-one attention from a teaching assistant and practice the three R's: Repetition, reinforcement, and reward. Jeanne Ward, the school's educational director, said children with autism are so easily distracted that they need to practice even the simplest of behavioral actions over and over again to learn them.

She said parents typically come to the school with goals that are broken down into "small, achievable tasks." For example, if parents want their children to learn to talk, the school would teach children to sit and be attentive and make eye contact -- basic skills that can be challenging for kids with autism.

Children typically spend about 10 hours a week at the school and another 10 hours with a therapist at home, Ms. Ward said.

Throughout the day, teachers scribble furiously on clipboards, marking down every step of a child's progress. An identical set of files are sent home so parents and therapists can pick up where the school left off, Ward said.

On a recent tour of the school, Rob Mignone, a teaching assistant, plopped down on the carpeted floor next to 2-year-old Aiden Miguel Lozado from Meiers Corners, a sea of Lego blocks spread out before them.

Mignone asked Aiden Miguel to pick out a blue block and place it on top of another blue one. Instead, Aiden Miguel got on his knees, turned around and began to crawl away.

"Where are you going?" Mignone said, gently lifting him and sitting him back down. He gestured once more toward the blocks and Aiden Miguel began to put them together, one by one.

"Great job," Mignone said. "Now let's keep going."

It's that sort of patience, persistence and encouragement that parents say has paid off.

Kari Basile, a Great Kills resident, said that her 3-year-old son, Paul, has been at the school for a few months and that she's amazed how quickly he's improved.

"He went from grunting and pointing to speaking in complete sentences," she said. "He can participate in an actual conversation, which he never used to do."

Her favorite part of the school day is when Paul mingles with other children -- some autistic, some not -- at an on-site day-care center that is open to anyone in the community. As Paul paints pictures of animals and reads Barney books with some of the other children, he learns how to be around other people without feeling awkward or afraid, Ms. Basile said.

Anyone interested in learning about Thursday's Child can walk in to the school on Seaview Avenue or call 311 and ask about the Early Intervention Program. TAG:Newhouse News Service material was used in this report.

Amisha Padnani covers education for the Advance. She may be reached at

Against Code, Boy's Play Area In Jeopardy

(WCCO) The family of a boy who has autism is fighting to keep something that seems pretty basic: a place to play.

"The deck was put up here to provide my son, who has autism, a safe play area," said Matt Foote of Paynesville, Minn.

According to Stearns County officials, the deck may have to come down because it was built without a permit, but the Foote family isn't removing the deck without a fight.

"You hear him out here like with his little squirrels, and he'll go inside and get his stuffed animals and he'll bring a blanket out and with his play grill -- he'll cook 'em food," said Matt Foote about his son Alex who has autism.

Five-year-old Alex doesn't know that he and his backyard friends might have to find another place to play. His parents say it wouldn't be safe for him to wander in the yard that backs up to Rice Lake.

"So if he were to have an open play area in the grass, the fear would be the lake," said Matt Foote.

Stearns County officials didn't want to comment on the case but they did say that the Foote family did not get a permit, and that the deck violates the state setback rule of 100 feet.

"When you step up, if it's less than 12 inches from the ground, you don't need a permit to build. There is not a permit to build until it becomes a deck," said Matt Foote.

"Well, unbenounced to us when the plans were drawn up, they we were always referred to it as a deck. Stearns County was referring to it as a patio. This patio became a deck when we put the railings up," he said.

The county did offer a compromise -- move the deck to the other side of the house. But there are no windows for the parents to watch Alex. The family was also told they could build a small, enclosed gazebo.

"That's tantamount to putting him in a dog kennel. Would you want to put your kid in a dog kennel? I mean 'here son, you can go play but you're stuck in here," said Matt Foote.

The family is appealing the county's decision and will be in court on August 21.

College Scholarship Awarded To Boy With Autism

Amie Bell says the LearningRx program changed her son's life. Nine-year-old Tripp Bell had been in Special Ed since kindergarten. Now, he's been awarded a college scholarship.

LearningRx's learning exercises are like games to help Tripp Bell focus and improve his memory. For years, Bell found it hard to concentrate.

"I got a lot of bad grades," says Bell.

His parents tried changing the nine-year-old's medication and diet and added allergy injections. It didn't work.

"He would go home and call himself stupid," says Amie Bell.

"I always disappoint my mom," says Tripp Bell.

Bell has autism, ADD, a learning disability, and severe short-term memory loss, but normal intelligence.

"I got bad grades. I never wanted to get bad grades."

That was before he enrolled in LearningRx's six- month program.

"We're not working academically. We're working at the root level to improve those skills we're born with," says Neal Best, LearningRx of Little Rock Center Director.

After two months of training exercises, his mother says the time she spent with him on homework was cut in half. He also won the program's National Student of the Year award along with a $1,000 college scholarship and a trip to Colorado.

The center director says bell has gained an average of six years in his mental abilities. No longer does he utter the word "stupid."

"I feel smart," says Bell.

He is no longer enrolled in Special Ed. The biggest reward his parents say this program boosted his learning ability and his self-esteem.

Tuesday, July 29, 2008

Taoiseach supports bid to have autistic boy enrolled for new term

By Niall Murray, Education Correspondent

A MOTHER who has spent four months trying to find a school in which to enrol her autistic son is hopeful that the support of Taoiseach Brian Cowen will help her case in time for him to begin classes in September.

Casey Naughton was expelled from his local school in Daingean, Co Offaly, because staff were not equipped to deal with his behaviour that sometimes disrupted classes. The nine-year-old has Asperger’s syndrome, a form of autism which sometimes cause outbursts and tempers.

But despite his mother Lisa’s attempts to enrol him in more than 20 schools to date, none has accepted Casey for next year. She brought her frustration to Tullamore on Friday, where Mr Cowen was opening a new social welfare office, along with Social and Family Affairs Minister Mary Hanafin, who was Education Minister until two months ago.

"They brought me in for a private meeting of about 40 minutes and the Taoiseach was very understanding of my situation as a family man," she said.

"They couldn’t make a specific commitment that I would find a school to take Casey but they said they would try to do something for me in the five weeks left before schools open," said Ms Naughton.

She has written to Education Minister Batt O’Keeffe a number of times about the situation since he took office in early May but said that she has not had any response. "I am a bit more hopeful now that I know the head of the Government might be able to push some buttons, but it shouldn’t take bringing a placard to an official function to be making progress. If schools were properly resourced to deal with kids like Casey, there would be no problem," she said.

Ms Naughton has been supported by the National Educational Welfare Board in bringing appeals against a number of schools which have refused to enrol her son. The latest appeal is due to be heard by the Department of Education next week, with a number of other refusals due to be the subject of appeal hearings in the coming weeks.

"It was upsetting for Casey being with me last week when I bought a new uniform for his brother because he’s wondering if he’s ever going back to school himself. And then he worries if he’ll make friends at any new school he does finally get into," she said.

Ms Naughton said children like Casey who are relatively high-functioning are not suited to dedicated autism units attached to some primary schools, but mainstream schools are not given enough resources to help teach them. Casey had been receiving home tuition between being expelled in February and the end of June but his mother had to borrow the €4,500 cost, as reported by the Irish Examiner last week, with the reimbursement from the Department of Education only being completed last Friday.

Sunday, July 27, 2008

Couple provides Temecula schools foundation on which to build efforts for autistic children

The Press-Enterprise

Three years ago, Mark and Kathy Anselmo held an auction to raise money for their autistic son's preschool class.

The event was a modest success for the parents, who were not expecting to rake in millions of dollars. Their newly formed nonprofit, Our Nicholas Foundation, came away with $20,000.

"Our initial goal was simple, a little wish list," said Mark Anselmo.

They donated funds to Ysabel Barnett Elementary School in Temecula, which had experienced cutbacks, helping to make sure the progress being made by their son, Nicholas, then 4, could continue.

Today, the foundation has given thousands of dollars to numerous Temecula schools and geared up for a first-ever Autism Summit, which will provide information on research, education and therapies to parents of autistic children.

"The summit is a whole new level of interaction for us. We're just playing quarterback," Mark Anselmo said.

On Tuesday, more than 50 vendors from the Inland area and Los Angeles, Orange and San Diego counties will be present. The event at Rancho Community Church is free, and child care will be provided.

Many parents in southwestern Riverside County travel far for their child's therapy. The summit is an opportunity to have all the professionals under the same roof.

When their son was diagnosed, Kathy Anselmo said, "we didn't know the next step. You're diagnosed and then what?"

Autism is the fastest-growing disability in the United States, affecting one child in 150, The spectrum disorder shows itself in abnormal social interactions, communication and behavior. No two children manifest the same symptoms, and therefore, no two children will respond the same way to solutions.

As a parent, you want to try everything for your child, she said.

Finding Their Path

"We're just two parents of an autistic child trying to find our own path," Mark Anselmo said.

Nicholas Anselmo was diagnosed at 2. By the time he was 4, he was making great strides at a special-needs preschool class at Barnett Elementary. Many students lost the one-on-one attention when budget cuts forced the district to reduce the staff, Anselmo said.

"That's the reason we started this foundation. Teachers were taking money out of their own paychecks to buy things," Kathy Anselmo said.

Nicholas, 7, will start second grade at Tony Tobin Elementary in the fall.

The Temecula Valley Unified School District said in a statement it was "extremely fortunate to have such a wonderful partnership with the Our Nicholas Foundation."

The foundation has provided more than 1,500 items to Temecula teachers.

It transformed an empty classroom at Barnett into additional space for special-needs students. At Vintage Hills Elementary, it built a sensory-integration room valued at $4,000.

It supported the expansion of Peer Buddies, a popular Erle Stanley Gardner Middle School program that assigns a handful of students to help those with special needs. It is now at a few elementary schools, and thanks to funds from the foundation, students proudly sport T-shirts and sweatshirts.

"It creates wonderful children who turn into wonderful adults," Mark Anselmo said.

The foundation has raised more than $60,000 since 2006, when it held its first auction at the Pechanga Resort & Casino.

The Anselmos have been able to satisfy every wish list received. That may change.

"Usually, we get an onslaught over the summer," Mark Anselmo said, though he predicts this year's budget cuts will make the needs greater. "I don't think it's going to be pretty."

Plus, the foundation, which has usually focused on Temecula schools, began sending fliers to Murrieta.

"Our eyes aren't aglow with huge numbers. That's why we're trying to bark up the grant tree," he said. They have received grants from Temecula and the Roripaugh Foundation.

Still Growing

Still, the Anselmos' foundation continues to grow.

It has created a board made up of local professionals and the parents of autistic children.

It began a library to lend out often-expensive research books.

It hoped to open a resource center for therapy sessions.

The Anselmos initially dreamed of opening a center to house various therapies, subsidized by the foundation and offered to parents at minimal cost. That dream quickly faded, however, because the cost to the foundation would exceed $2 million a year.

They lowered their sights to a scaled-down version. For about $250,000 a year, the foundation could provide computers and space for therapy sessions.

"We're helping schools now, but people are asking what's going to happen 10 years from now," Mark Anselmo said.

There has been an explosion of new autism cases among young children, but others are growing into adulthood now.

Though the foundation has surpassed its initial goal of donating tools to Nicholas' preschool class, the Anselmos still stick to their roots.

"This is a business we've evolved into without losing why we started," Mark Anselmo said.

Saturday, July 26, 2008

Dealing With Autism As Children Become Teenagers

(WCCO) Life for most teenagers is one big thrill ride. This is also true for 15-year-old Jake Brasch, who is among the growing number of teens in Minnesota living with autism. He literally enjoys the ride when he's at places like Valleyfair, but when it's time for school, life tends to lose its thrill.

Dawn Brasch, Jake's mother, said he would like to go sit with typical kids, but doesn't have the skill to do that.

"He anticipates being rejected or being laughed at or being turned down so he won't attempt to go break into a group," she said. It's difficult for her to tell him it's OK to try because he's so afraid to approach peers.

Dawn found out Jake had autism when he was 18 months old. She said she could tell there was something different because he has a twin brother. Jake and Michael both spoke just after a year, but Jake lost his ability to speak just a few months later. He didn't speak again until he was 5 or 6.

"Michael took on a lot of responsibility for his twin brother when he was very little, saying, 'I must be a bad brother because my brother can't talk,'" Dawn said.

She said things have gotten better as they have gotten older. Now teenagers, Michael and his brother actually have things in common, such as working out.

"He's always trying to get stronger. He always wants to look good for the ladies," Michael said.

Jake said he wants to have a girlfriend, but his mom isn't sure if he could or how she would deal with it. Dating can be an issue for parents of young adults on this spectrum, but that doesn't stop teens with autism from wanting to take girls out.

Cindy Merriam's 13-year-old son John, who is considered high-functioning, is taking an interest in girls as well.

"I had a hard time getting his hair cut because the girls liked his hair curly," she admitted.

John told his mother there is one special girl he wants to date.

"I say, 'I just want to take you out on a date.' That's what most of my friends do, and I'm going to do the same thing," he said.

His father tried to explain to him the girl would have to go willingly, but John was more concerned with getting her out of the house.

"You're going to help me get her outside whether she likes it or not!" John told him.

John's father said the most difficult part of having a child with autism is adjusting expectations and realizing it is, at least currently, a life-long diagnosis. But he said John still enjoys doing typical teenage things, such as playing soccer and running track.

"He's never going to be the star of the team, but you're just happy he can do it," he said.

Another issue many teenagers with autism share in common with other adolescents is sensitivity towards peers' perception of them. John said he occasionally gets a hard time at school.

"There are some people who are not nice and think I'm crazy and stupid and a loser and a stupid retard," said John.

"You have to accept it in your heart, and it's not easy," Cindy admitted.

Because of the mood swings and rage that kids with autism go through, the Merriam family had to put John on medication.

"We actually went a long time and would not allow the medication," Cindy said, until pediatricians told her withholding medication was doing him no favors.

Dawn Brasch put Jake on medication as well.

"I would prefer not to, but I also can't have him -- at this age and this height and this weight-- beating me up because he's so frustrated he doesn't know what else to do," she said.

The rollercoaster emotions teens often encounter can be much more difficult for those with autism to understand and deal with. Jake said his classmates can be mean sometimes, which makes it hard for him and his siblings.

His sister Kelsey Brasch said she wishes he was a normal kid some days, "but then some of the stuff he does, you just don't see other kids do that much. So it's fun to see that."

As hard as being a teenager has been, Jake's special education teacher Angie Gamades said his future looks bright

"I see him in the future being able to do something that he can really excel at with kids," she said. "Jake is very special."

According to Gamades, Jake has shown interest in nursing, a profession she said she could see him in. He told WCCO's Amelia Santaniello he also aspired to becoming a movie actor.

John's parents are hopeful for his future as well, though professionals have told them he probably will end up in a group home. But they aren't ready to give up on him.

"I think there's something in there; we just haven't discovered it yet," Cindy said.

Family is all that's left

Attaining, and retaining, the American dream never came easy for Rick and Yoko Cummings.

The couple - he an insurance agent, she a nurse at Little Company of Mary Hospital - lived in a modest Torrance home with their two children. Daughter Laurie, 13, has Down syndrome and autism, while their 10-year-old son, Joshua, is also autistic.

At times, Rick Cummings, a 61-year-old Vietnam War veteran, has worked two jobs to support the family, said next-door neighbor Patrick Carnahan, who has known the couple since they moved into their 1950s-era home in 1983.

As the economy worsened last fall, Cummings was forced to move his 84-year-old aunt, who has dementia, out of a skilled nursing facility and into his home because he could no longer afford the cost of her care.

"They're rich in life," Carnahan said. "They just don't have a lot of money."

Then at 8:30 a.m. last Saturday a fire swept through their Walteria home, gutting the inside and destroying virtually everything the family owned, including their now half-melted 1989 Toyota Cressida.

The family escaped just in time; Yoko Cummings, who had tried to rescue Patricia McKibbin, her husband's aunt, was almost overcome by dense smoke. She was pulled through a window by Carnahan and a friend just in time.

It was left to Gemini, the family's Australian shepherd mix, to help McKibbin.

"Gemini is the hero," said Yoko Cummings, 52. "The smoke was so thick I

knew I couldn't save Patricia by myself."

Gemini stayed with the disoriented elderly woman until firefighters arrived. Despite choking smoke and flames, the dog didn't run from the house.

"They heard (the dog) whimpering," Rick Cummings said. "They said without her whimpering they wouldn't have been able to find Patricia."

Gemini was unconscious for 20 minutes after firefighters pulled McKibbin and the dog from the house.

McKibbin has recovered.

Gemini needed two days at the vet to recover from the ordeal, including six hours of oxygen treatment. The bill came to $2,500, although the vet knocked $500 off.

But that is the least of the Cummings' problems.

They are homeless and without transportation, with two kids and an octogenarian relative requiring constant attention and specialized care. (The couple also have two grown children who did not live in the house.)

And virtually everything they owned was consumed by flames, including family photographs and even Rick Cummings' beloved old surfboard - although Carnahan hopes it can be restored.

Fire investigators suspect the blaze started when a lamp was somehow knocked over onto a couch in an enclosed patio.

Insurance would likely take care of rebuilding their home, although that could take up to a year; it's the short-term that poses a challenge for the family.

"These guys just need to get up and running," Carnahan said. "It's having a profound effect on them."

The neighborhood has rallied to their aid.

A neighbor took the family members in temporarily while they look for an apartment; McKibbin is back in a skilled nursing facility.

The local Neighborhood Watch captain issued an e-mail plea for donations.

The home of Carnahan and his wife, Valerie, became an unofficial dropping-off point for donated clothing and other items.

A retired university professor contributed a laptop computer for the 10-year-old boy to replace the one he lost in the fire. Cyberspace provided solace for Joshua even before the blaze; he has not done well emotionally since, his parents said.

Staff at Launch Preschool, which operates a program for autistic children that Laurie and Joshua attend, are holding a carwash and barbecue today to raise money for the family. On Tuesday, a neighboring family will host a bake sale and lemonade stand to raise money.

"They're an absolutely amazing family," said Sarah Perdue, a preschool staff member who has baby-sat Laurie and Joshua for seven years.

"They work so hard, so I feel horrible for them," Perdue added. "I've never seen them lose their patience with the kids and those kids are very trying."

The family has been stunned by the response so far.

"A house is a house; our life is being put on hold," said Yoko Cummings, her voice breaking. "But it's just been overwhelming how people have helped."

On Thursday afternoon, Carnahan sat outside his house and got a little emotional himself as he watched a work crew remove debris and charred belongings.

"I'm watching these people seeing mementoes from their life being brought out and dumping them in the Dumpster," he said. "The devastation they've experienced and what it's doing to their family and what it's done to their way of life."

Carnahan's voice trailed off.

"These guys are the real deal," he added. "I love these people to death."

With a neighborhood's help, the Cummingses hope to put the nightmare behind them - and get their American dream back.


Two fundraisers are scheduled to help the Cummings family with expenses:

The Launch Preschool carwash and barbecue is from 11 a.m. to 3 p.m. today at 4100 W. 227th St.

Ben Walls and his family, who live in the same Walteria neighborhood as the Cummingses, will host a bake sale and lemonade stand from 11:30 a.m. to 1:30 p.m. Tuesday at the corner of Newton Street and Weston Road.

Show challenges autistic stereotypes


Take one mother.

Add one daughter with autistic spectrum disorder.

Add a dash of music, a pinch of melody and generous heapings of passion and inspiration.

Mix well and you've got "KiSara."

Pronounced "kee'-SA'-ra," the mother/daughter singing duo of Kim Souch and Sara Sobey graced Our Friendship Centre in Lively on Wednesday afternoon.

The audience of more than 100, including clients and caregivers from hosts Community Living Greater Sudbury, as well as other local agencies, gave KiSara a warm and receptive welcome.

Dancing, stamping their feet and swaying throughout the concert, some audience members clapped and cheered as Souch and 19-year-old Sobey sang an Elvis tune from the Disney film "Lilo and Stitch" -- one of Sobey's favourite movies.

KiSara also performed some of Souch's own songs, including "Possibilities" and "Like Mother, Like Daughter."

Souch spoke to The Star about the message she hopes the music transcends to all parents and families of children with autistic spectrum disorder, and the importance of celebrating abilities and talents.

"There's too much focus on "disabilities," Souch said.

"You have so much help assessing what's wrong. Our song, 'Possibilities,' focuses on talents you can build on.

"I've been a musician for many years," Souch said. "Sara's very musical. She literally sang before she spoke."

When Sobey was three years old, her mother began to notice something different about her.

"She seemed disconnected," she recalls. "It was hard to peg down as to what it was and you go through the whole cycle."

Souch said her daughter was diagnosed with autistic spectrum disorder, more commonly known as autism, three years later.

At age 8, Sobey took to the stage, performing in school concerts. Since she was 12, she has been accompanying her mother in performances for audiences whose appreciative members offer nothing but compliments and praise.

Souch, who helped form the Huron Perth Chapter of Autism Ontario located near her Seaforth, Ont., home, said she learned everything she could about autism and how and why it occurs.

She says autism creates an atmosphere of hyper-sensitivity within the child, and that everything surrounding him or her is felt at maximum volume. She said the condition not only affects sound, but can also result in a visual "overload."

For example, a child might claim to see "particles of air."

She said society and the medical profession have come a long way from the days autism was referred to as "The cold-parent syndrome."

Because of these deep-rooted and unfounded diagnoses, Souch emphasized how important it is for parents and families to turn their experience with autism into a recipe for hope and celebration.

Sudbury's visit was part of the final leg of their "Kaleidoscope Ride" tour, which took KiSara -- accompanied by Talia Williamson on bass, Brian Mole on drums and Roger Williamson on lead guitar -- to cities such as New Westminster, B. C., Calgary and Thunder Bay.

Sara, whose rendition of "Over the Rainbow" garnered a standing ovation, was happy to talk about the music she listens to when she's not performing.

"Just about anything," she said, smiling as she clutched her treasured Disney DVDs in her hand.

She shook her head and added, "Except rap and death metal."